Researchers from the Rollins School of Public Health are partnering with the University of Minnesota and Johns Hopkinsto lead a new national resource to advance dementia care.
The State Alzheimer’s Research Support (StARS) Center—funded by a $17 million grant from the National Institute on Aging—will foster research collaboration and create a national data infrastructure to evaluate innovative state and regional dementia care programs for effectiveness, accessibility, and equity so they can be adapted broadly. Building upon this insight, the center will also award pilot funding to assist states with evaluating coordinated dementia care services and policies that help people with dementia stay in their homes and communities.
“If you don’t intervene early with someone who has dementia, they can end up in crisis, needing emergency department or nursing home care, with exhausted family caregivers, and at greater risk of dying. These are the problems we are trying to solve,” says co-principal investigator Regina Shih, PhD, professor in the Departments of Epidemiology and Health Policy and Management at Rollins. “We want to encourage uptake of programs that we know work in one state and share it with other states with suggestions for the components that could work best for them, and do this across the United States.”
StARS will prioritize pilot projects that evaluate the impact of dementia care services in under-resourced communities to ensure that data from underrepresented groups are included in the national data infrastructure. According to the Alzheimer’s Association, while the rate of Alzheimer’s and other dementias is significantly higher among Black and Hispanic people in the United States than non-Hispanic whites, these populations are less likely to receive high-quality dementia care.
The center will have four main functions:
- Establishing partnerships: Working with state and regional partners to identify dementia care programs, policies, and data sources, and assist in the development of collaborations between key providers within states.
- Supporting dementia-care pilot projects: Providing funding and support for up to 16 states to conduct pilot projects that assess the structure and outcomes of dementia care services.
- Building a statewide and nationwide data infrastructure: Linking and merging multiple data systems from various state and national sources, enabling comprehensive evaluation and comparison of dementia care services across states.
- Developing and implementing a dissemination strategy: Sharing StARS-generated data and information with key stakeholders.
“We know anecdotally that there are a lot of very good state and regional programs out there that are making a difference in the lives of people with Alzheimer’s and Alzheimer’s-related dementias and their caregivers. But unfortunately, policymakers, providers, and researchers have lacked the information about these programs that would demonstrate their effectiveness and assist efforts to replicate and disseminate them in other communities,” says co-principal investigator Joseph Gaugler, PhD, from University of Minnesota School of Public Health. “By building the infrastructure to coordinate and centralize data, the goal of StARS is to foster innovation in dementia care, spur policy innovations to finance and expand successful programs, and enhance the overall well-being of people living with dementia and their caregivers.”
Researchers from Brown University, The University of North Carolina at Chapel Hill, and the Alzheimer's Association will also be partners in the StARS center.